Guest guest Posted January 2, 2007 Report Share Posted January 2, 2007 Welcome . I am also mom to five kids, 4 girls and my son who has IS and CBPS. My kids are older, ages 21, 19, 17, and 13, then little at 17 months. does sit by himself yet, he does sit up for brief seconds but when he tips over he does not reach to catch himself. He is non-verbal. Does not crawl or stand on his own because his trunk is too weak. In February will be 1 year SF He is a happy little guy generally. Our therapies are like this. Monday - 1 hour Early Intervention Tuesday - 1 hour Speech Therapy 1 hour OT/PT therapy Wednesday - 1 hour Early Intervention 1 hour OT 1 hour PT Thursday - 1 hour Speech Therapy Friday - 1 hour Speech/PT Therapy We take the weekends off Because is most likely going to not have a huge vocabulary and will most likely not be able to use sign language because of his condition, we are teaching eye contact rules, looking into buttons and such, voice boxes. As you can see...our days are typically busy but we get all the therapies in while the girls are at work or school, so we do have the evenings for family time. I had to quit my job and depend solely on my husbands income.... You said you were waiting for Dobyns to verify PMG. DO you know what percentage? Or the area? Mom to the crew... <http://www.babyjellybeans.com/web/do/site?ID=5864> http://www.babyjellybeans.com/web/do/site?ID=5864 _____ From: polymicrogyria [mailto:polymicrogyria ] On Behalf Of carrie_and_kids Sent: Tuesday, January 02, 2007 3:51 AM To: polymicrogyria Subject: Introduction Hi. I'm and I have five kiddoes, the youngest of which, Quinn, has partial lissencephaly. Dr. Dobyns should have Quinn's MRI now--the geneticist thinks it's likely PMG and is looking for confirmation. Quinn will be a year old on Jan. 8. He's a happy baby, developmentally around 5 mos. He'll start solids this week (currently exclusively bfed). He is on Trileptal for seizures and Prevacid for reflux. Quinn has Speech therapy twice a month, OT and PT each weekly, vision therapy every couple of months or so. His tone is low unless he's excited at which point he becomes fairly rigid. He doesn't yet sit. He orients to sound and has begun to scoot himself a little toward things he finds interesting--mirrors, high contrast toys, sounds. He has intermittent exotropia and his functional vision is about 20/310, so his visual input is compromised. He loves pat-a-cake and peek-a-boo and most kinds of music--he will " talk " to the organ at church. He doesn't often sleep through the night--usually three hours is about as long as he goes. His nap patterns are irregular. He's had 2 CTs, an MRI, two EEGs, ultrasounds (and x-ray) which ruled out leaky bowel and inguinal hernia. I've been " lurking " for awhile and am encouraged to realize that I'm not alone on this path. There's not much info out there unless it's from parents (as I'm sure you all know!). My husband left when I was just beginning the second trimester with Quinn (before the ultrasound showed the baby's abdominal ascites and enlarged rear ventricles in the brain). He's an MD/PhD and in the past I've relied heavily on him for medical/health info for our older kids. The situation rather prevents that now. I'm grateful to have found you all and look forward to learning more from and about you. I'm wondering what your days look like as far as therapies, appointments, etc.? I'm pretty busy with all this (plus the older kids)--does it slow down? Is there any such thing as " typical " with PMG or does it depend entirely on the other diagnoses for each child? Thanks and Happy New Year, mom to 11yob, 9,6,4 yog and Quinn, 11 3/4 months Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 3, 2007 Report Share Posted January 3, 2007 Hi . So I guess the answer is no, it doesn't slack off? ;o) What I know about Quinn's lissencephaly is that it's primarily from the middle to the rear of his brain. The last time I discussed it with the neuro doc, he mentioned the seizure activity taking place in the left frontal lobe, " where there's more damage. " I still don't know what that means. I'd like to look at the films and talk about them with someone, but it can be hard to be taken seriously without that MD..... I looked at your site--what a *cutie.* Sounds like our boys have some things in common. my email: 5littleclassicalducks@... blog: www.duramater5.blogspot.com How did you become involved with the early intervention therapy? What kinds of things does do in IT? > > Welcome . > > > > I am also mom to five kids, 4 girls and my son who has IS and CBPS. > > My kids are older, ages 21, 19, 17, and 13, then little at 17 months. > > > > does sit by himself yet, he does sit up for brief seconds but when he > tips over he does not reach to catch himself. > > He is non-verbal. Does not crawl or stand on his own because his trunk is > too weak. In February will be 1 year SF > > He is a happy little guy generally. > > > > Our therapies are like this. > > > > Monday - 1 hour Early Intervention > > Tuesday - 1 hour Speech Therapy > > 1 hour OT/PT therapy > > Wednesday - 1 hour Early Intervention > > 1 hour OT > > 1 hour PT > > Thursday - 1 hour Speech Therapy > > Friday - 1 hour Speech/PT Therapy > > > > We take the weekends off > > > > Because is most likely going to not have a huge vocabulary and will > most likely not be able to use sign language because of his condition, we > are teaching eye contact rules, looking into buttons and such, voice boxes. > > As you can see...our days are typically busy but we get all the therapies in > while the girls are at work or school, so we do have the evenings for family > time. I had to quit my job and depend solely on my husbands income.... > > > > You said you were waiting for Dobyns to verify PMG. DO you know what > percentage? Or the area? > > > > > > Mom to the crew... > > <http://www.babyjellybeans.com/web/do/site?ID=5864> > http://www.babyjellybeans.com/web/do/site?ID=5864 > > > > > > _____ > > From: polymicrogyria [mailto:polymicrogyria ] > On Behalf Of carrie_and_kids > Sent: Tuesday, January 02, 2007 3:51 AM > To: polymicrogyria > Subject: Introduction > > > > Hi. I'm and I have five kiddoes, the youngest of which, > Quinn, has partial lissencephaly. Dr. Dobyns should have Quinn's MRI > now--the geneticist thinks it's likely PMG and is looking for > confirmation. > > Quinn will be a year old on Jan. 8. He's a happy baby, > developmentally around 5 mos. He'll start solids this week > (currently exclusively bfed). He is on Trileptal for seizures and > Prevacid for reflux. Quinn has Speech therapy twice a month, OT and > PT each weekly, vision therapy every couple of months or so. His > tone is low unless he's excited at which point he becomes fairly > rigid. He doesn't yet sit. He orients to sound and has begun to > scoot himself a little toward things he finds interesting--mirrors, > high contrast toys, sounds. He has intermittent exotropia and his > functional vision is about 20/310, so his visual input is > compromised. He loves pat-a-cake and peek-a-boo and most kinds of > music--he will " talk " to the organ at church. He doesn't often sleep > through the night--usually three hours is about as long as he goes. > His nap patterns are irregular. He's had 2 CTs, an MRI, two EEGs, > ultrasounds (and x-ray) which ruled out leaky bowel and inguinal > hernia. > > I've been " lurking " for awhile and am encouraged to realize that I'm > not alone on this path. There's not much info out there unless it's > from parents (as I'm sure you all know!). My husband left when I was > just beginning the second trimester with Quinn (before the ultrasound > showed the baby's abdominal ascites and enlarged rear ventricles in > the brain). He's an MD/PhD and in the past I've relied heavily on > him for medical/health info for our older kids. The situation rather > prevents that now. I'm grateful to have found you all and look > forward to learning more from and about you. > > I'm wondering what your days look like as far as therapies, > appointments, etc.? I'm pretty busy with all this (plus the older > kids)--does it slow down? Is there any such thing as " typical " with > PMG or does it depend entirely on the other diagnoses for each child? > > Thanks and Happy New Year, > > mom to 11yob, 9,6,4 yog and Quinn, 11 3/4 months > > > > > > Quote Link to comment Share on other sites More sharing options...
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